Could your Fibromyalgia Actually be Ehlers-Danlos?

Could your Fibromyalgia Actually be Ehlers-Danlos Syndrome? – National Pain Report – By Ellen Lenox Smith – Oct 2018

I was diagnosed with Ehlers-Danlos Syndrome (EDS), a condition you are born with, fourteen years ago at the age of fifty-four. The physical symptoms created by EDS mimic the symptoms associated with fibromyalgia.

As a result, many of the individuals suffering from EDS have, like me, initially been diagnosed with the much more commonly diagnosed condition of Fibro. I can attest to this dynamic for over the past decade, I have had contact with many EDS patients sharing similar stories.

This happened to me too. I resisted a fibromyalgia diagnosis for years until I needed a diagnosis to justify my pain medication to my insurance company. Even at that time, I felt/knew it wasn’t right. 

So I spent several years more going to different doctors, trying different treatments and exploring other possible causes for my pain. I spent a great deal of time, energy, and money searching for a diagnosis that “fit” my strange symptoms better.

Looking back, I’m amazed that I was willing to gamble so much money on only a hunch that there was a better diagnosis when I couldn’t even imagine what it would be.

I wonder why I didn’t discount my hunch as merely a psychological manifestiation of wishful thinking. (With a diagnosis would come a cure, or so I thought at the time.)

I disregarded the fibromyalgia diagnosis and pursued more and more medical consultations, tests, and treatments to find out what my problem *really* was.

I have also had contact with many medical professionals, whom, after becoming familiar with EDS and all its many symptomatic manifestations, have concluded that many of their fibro patients were afflicted with EDS.

The problem is EDS is not commonly diagnosed in a timely manner for so many of us. Very few doctors are taught much about EDS in medical school

Therefore, they don’t properly put the pieces of the puzzle together to realize the correct diagnosis. The confusing thing for a doctor is that we present with the same positive pressure points checked to help determine fibro

What make EDS different from fibromyalgia?

One with this condition has deformed collagen, the glue of the body.

Therefore, ligaments and tendons do not have the strength to function effectively to work correctly and muscles must work on overload to compensate for their lack of effectiveness. This causes looseness in the joints that allows for bones to shift.

One lives with many subluxations (partial dislocations) and even full dislocations. A simple twist, turn, hug can all cause things to shift. Unfortunately, this shifting of the structure creates pain that one must learn how to live with. Remember, it IS NOT a Systemic Autoimmune Disorder or a Collagen Vascular Disorder.

To correctly diagnose Ehlers-Danlos, you need to get to a geneticist who is familiar with this condition. Diagnosis. Extremely loose joints, fragile or stretchy skin, and a family history of EhlersDanlos syndrome are often enough to make a diagnosis

Does it make a big difference to your health to treat fibro when it is EDS?

Yes! There are specific issues to keep an eye out for.  A neurosurgeon looks for three possible issues with EDS:

  1. Tethered Cord,
  2. Instability of the Neck and
  3. Chiari I Malformation.

Some people have all issues and others get lucky and have one or even none. Each person has a different journey with this condition

It is so important that the diagnosis is done in a timely manner if you instead have EDS, for there are actions to take to begin the long journey of learning to live with better quality of life.

EDS is a painful lifelong condition.

This is a very painful condition and it is not a time to try to be a hero and ignore the pain.

You will enjoy your life more if you can try to get on top of the pain, no matter what medication you find compatible with your unique body chemistry!

This is not the first article I’ve seen pointing out how easily EDS can be mistaken for fibromyalgia. Some even believe that EDS could “cause” fibromyalgia, but that could be due to the frequency of misdiagnoses.

2 thoughts on “Could your Fibromyalgia Actually be Ehlers-Danlos?

  1. Laura P. Schulman, MD, MA

    Actually, EDS is the epitome of a collagen vascular disorder. Abnormal collagen and resulting extreme vascular fragility in varying degrees. I have hematomas everywhere from trivial trauma (picking up a cup, grasping the steering wheel, walking…the ones on my feet really kill.) I also get them on the inside, which will probably kill me at some point. So I believe the EDS classification as a collagen vascular disease is correct.

    Liked by 1 person

  2. Pingback: Management of chronic pain in EDS – part 2 | EDS and Chronic Pain News & Info

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